“You say you got a real solution, Well, you know, We’d all love to see the plan. You ask me for a contribution, Well, you know, We’re all doing what we can.” John Lennon’s lyrics from the song “Revolution” by the Beatles capture some of my concerns regarding the…
Like most folks who live with ALS, I tend to get stuck in the shortsighted day-to-day management of my symptoms. Over the years, I’ve developed several strategies that help me change my mental focus from a short view to a longer one in which I’m open to the possibilities of…
My husband, Todd, began monitoring his breathing after he was diagnosed with ALS. We were told that he’d need to have surgery to insert a feeding tube before his forced vital capacity (FVC) dipped below 50%, and so he had it measured every few months at an ALS clinic.
“And so castles made of sand Fall into the sea eventually.” — Jimi Hendrix From time to time, given my predilection for quoting songs in my columns, I’m asked whether a song triggers content, or if it’s subject matter in search of lyrics. The answer is, circumstantially, either. On…
Learning I had amyotrophic lateral sclerosis (ALS) was certainly a big adjustment. The changes to my life that slowly chipped away at my goals and sense of self made me feel lost. It was only when I observed ALS patients who were thriving that I was able to appreciate how…
In the days after my husband, Todd, was diagnosed with ALS, I was overwhelmed with what lay before us. But Todd went into preparation mode. “We need to sell the house,” he said. “We need to move near your family.” It took more than a year for the house to…
“What you need, my son Is a holiday in Cambodia Where people dress in black.” Those lyrics from the song “Holiday in Cambodia” by the punk rock band Dead Kennedys illustrate how counterintuitive any public holiday display may appear. Without knowing the context, all-black attire may seem odd. Yet,…
I realize the words “ALS” and “humor” don’t always hang out together, but in my life they often do. I’ve been living with ALS since 2010, and over the years, I’ve learned not to let a day go by without finding humor in the absurdity of it all. Most of…
“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?…
When I was in elementary school, my mom would occasionally take my brother and me to Woolworth’s, our local five-and-dime store. We would often have lunch there, and my staple was the open-faced roast beef platter, followed by a hot fudge sundae. Afterward, my brother and I were left…
